What does a report on cancer survival rates in the United States have in common with civil unrest in Syria? The withering of fear.

Fear of cancer in the national psyche began to wither in July of 1985, with an essay entitled “Seasons of Survival: Reflections of a Physician with Cancer.” [Mullan, Fitzhugh, M.D. New England Journal of Medicine 313, No. 4 (July 25, 1985): 270-273.] Fear of tyranny in the Middle East—in Syria no less than in occupied Iraq—began to wither on April 9, 2003, when a U. S. Marine armored vehicle toppled the imposing statue of Saddam Hussein in Baghdad’s Firdos Square.

From each of these seemingly unrelated historical inflection points have come a flowering of human potential.

The CDC reported in the March 11 issue of the Morbidity and Mortality Weekly Reporthttp://www.cdc.gov/mmwr/preview/mmwrhtml/mm6009a1.htm?s_cid=mm6009a1_w—that the five year cancer survival rate in America is now up to 66%, the highest in the world, confirming empirically what Dr. Mullan passionately asserted two decades before: that it was time to begin speaking of cancer survivors rather than cancer victims. By believing it could be so, the tenacious striving of medical science eventually made it so.

The eidetic image of Saddam Hussein’s massive totem falling in central Baghdad is an equally powerful symbol of the dynamism of human belief, indelibly burning into the brains of millions of oppressed people throughout the Middle East the notion that if Iraq could be free of Saddam, they could all be free. In Tunisia and Egypt and maybe Libya and even in the police state of Syria—and yes, one day Iran, too. Like cancer survival rates—climbing slowly but inexorably, decade by decade—so will the number of countries in the Middle East no longer under the yoke of authoritarian regimes rise too, painfully but relentlessly.

Yet neither of these vital struggles—the quest to overcome cancer and the quest to overcome tyranny—would ever have been joined without the necessary withering of fear. For fear suffocates hope, and it is hope that gives rise to noble deed. Only when fear withers can hope and nobility of deed germinate and take root, to finally grow into the stout trees of human health and liberty.

Remarkably, a single work of literature anticipated—as great art often does anticipate—each of these still-chrysalid human triumphs, the (partial) cure of cancer and the incipient bloom of liberty amongst the darkest of tyrannies: The Cancer Ward, by Aleksandr Solzhenitsyn. First published in 1967, the book was banned in the former Soviet Union for its symbolic contumely of Soviet totalitarianism. Though famous as a metaphor for the ravages of tyranny, it is also—all 616 pages of it—a poignant and courageous narrative on the ravages of cancer in the mid-twentieth century.

The action occurs in a hospital ward—Ward 13— dedicated to the care of cancer victims in Central Asia in 1955. The patients, who come from all strata of Soviet society, have one thing in common: cancer.

The main character is Oleg Kostoglotov, a political exile who is transferred to Ward 13 from a gulag for treatment of a nebulous tumor. (The author had a similar real-life experience: Solzhenitsyn was transferred to a hospital in Tashkent for treatment of testicular cancer after having spent eight years in exile as a political prisoner.) Kostoglotov’s foil in the story is Pavel Rusanov, a Communist Party minion who has an enlarging neck mass and boundless contempt for the other patients—whom Solzhenitsyn democratically introduces chapter-by-chapter—of Ward 13.

But Pavel Nikolayevich was tormented, no less than by the disease itself, by having to enter the clinic as an ordinary patient, just like everyone else.

Rusanov is as much in denial of his neck cancer as he is of the “cancer” of Soviet tyranny.

“We mustn’t talk about death! We mustn’t even remind anyone of it.”

To which Kostoglotov responds, “If we can’t talk about death HERE, where on earth can we?”

Prominent in the story, too, are Zoya, a nurse/medical student to whom Kostoglotov is attracted—“The strongest memory he had…was of her neatly supported breasts which formed, as it were, a little shelf, almost horizontal”—and Vera Gangart, a female physician (all the physicians at Ward 13 are female) whose romance with Kostoglotov is never consummated.

…he began thinking about Vera Gangart…Her smile was kind, not so much her smile as the lips themselves. They were vital, separate lips…made, as all lips are, for kissing, yet they had other more important work to do: to sing of brightness and beauty.

But mostly the patients of Ward 13 think about their cancers. It is everywhere, all around them, in plain sight day after day, week after week, moment after excruciating moment.

There was a stabbing pain under his neck—his tumor, deaf and indifferent, had moved in to shut off the whole world.

But the real cancer in the novel is tyranny. Again, it is Kostoglotov who frames the matter.

“A man dies from a tumor, so how can a country survive with growths like labor camps and exiles?”

The corrosive effect of totalitarianism oozes from the pores of every patient of Ward 13 like the shameful ichor it is. The librarian Shulubin (afflicted with rectal cancer), one of the “good Russians” who cooperated with Stalin’s purges, gives voice to it while speaking to Kostoglotov.

“At least you haven’t had to stoop so low…You people were arrested, but we were herded into meetings to ‘expose’ you. They executed people like you, but they made us stand up and applaud the verdicts…they made us demand the firing squad, demand it!”

A 1968 New York Times book review of The Cancer Ward, entitled “A Diseased Body Politic,” correctly identified the true subject matter of Solzhenitsyn’s story.

http://www.nytimes.com/books/98/03/01/home/solz-cancer.html

But the review couldn’t have been more mistaken in its opinion of the impact the novel would have.

“Clearly Solzhenitsyn believes in the power of literature to exorcise Stalinism. Vain as this hope may be, it has inextricably bound a great writer to his great, and perhaps his only subject.”

Pace New York Times, it was precisely the power of Aleksandr Solzhenitsyn’s literature—One Day in the Life of Ivan Denisovich; The First Circle; The Gulag Archipelago; and The Cancer Ward—that began the decades-long exorcism of Leninism and Stalinism from Russia. The Cancer Ward challenged tyranny in the same way Dr. Fitzhugh Mullan challenged cancer and in the same way that America challenged the brutal authoritarianism of Saddam Hussein’s Iraq: by replacing fear with hope.

May hope thrive, and may health and liberty follow.

The title of Everyman, the mordant yet immensely moving 2006 novel by Philip Roth, comes from a medieval play of the same name, and is intended to remind us that aging and death await us all, every man and every woman. In 2009, Roth became the third living American writer to have his work published by the Library of Congress. As I have said before in these pages, Philip Roth is the greatest living writer never to have won the Nobel Prize in Literature.

Roth sets the tone for this 192-page novella with an epigraph quoting Keats.

Here where men sit and hear each other groan; / Where palsy shakes a few, sad, last gray hairs, / Where youth grows pale, and spectre-thin, and dies; / Where but to think is to be full of sorrow.

The novel begins with Everyman’s funeral, then skips backward in time to an unvarnished accounting of his life. The protagonist, who remains unnamed throughout, is a 71-year-old retired—and materially successful—advertising executive who has walked away from two marriages, three children, and his once-revered older brother, leaving him ill-equipped to cope later in life with his decaying body and a series of medical events—appendicitis, two heart surgeries, and various other procedures—that force him to confront his own mortality. His death-and-dying tocsin, though, rings well before his body fails him, at his father’s funeral.

All at once he saw his father’s mouth as if there were no coffin, as if the dirt they were throwing into the grave was being deposited straight down onto him, filling up his mouth, blinding his eyes, clogging his nostrils and closing off his ears. He could taste the dirt coating the inside of his mouth well after they had left the cemetery and returned to New York.

Everyman reaches old age and Starfish Beach, the retirement community his infirmities consign him to, cynical and resentful, unshriven (by two adult sons) for cheating on his first wife, unforgiving of the body that betrays him and robs him of his prodigious sexual vigor. Only his daughter from his second marriage remains loyal—as only daughters can. She sees to it that he is buried in a Jewish cemetery alongside his parents, even though he is an atheist, because she …didn’t want him to be somewhere alone.

The last to pay respects at his funeral is Maureen, a home health nurse who cared for him after his first heart surgery.

…a battler from the look of her and no stranger to either life or death. When, with a smile, she let the dirt slip slowly across her curled palm and out the side of her hand onto the coffin, the gesture looked like a prelude to a carnal act. Clearly this was a man to whom she’d once given much thought.

And that was that.

…In a matter of minutes, everybody had walked away—wearily and tearfully walked away from our species’ least favorite activity—and he was left behind. Of course, as when anyone dies, though many were grief-stricken, others remained unperturbed, or found themselves relieved, or, for reasons good or bad, were genuinely pleased.

I once recommended—prescribed—this book to a patient, now deceased, who in addition to being on dialysis with kidney failure, had heart disease so severe it was clear to all, my patient included, that he would not survive another year. A fiercely intelligent man, he understood his predicament intellectually, but refused emotionally to accept it. When he grew angry and then despondent, I suggested Everyman, which he agreed to read. He found the protagonist’s cynicism and bitterness and lack of grace so contemptible he vowed to die a better way. For the remainder of his life, a few months only, he was notably happier and at peace. Sometimes, only great fiction can tell the truth in a way that is transformative; we humble doctors lack the words.

Everyman is a profound adumbration that settles nothing, but fearlessly illuminates everything, leading the reader to a place where confronting death is at least possible.

Why do we fear death so? Do the atheists among us fear they are right? And the faithful that they are wrong? And this notion of bodily decay, how to deal with that, our unwanted senescence? Is there no limit to what we are willing to do to forestall it?

Perhaps it is the loss of those we love that we most fear. A different way of saying we fear losing our humanity. But what I have learned from my patients, I think, is that it is the sweetness of life, the intensity, the vividness we fear losing. And that the balm for this fear is to have savored fully all the heavenly ambrosia this mortal world holds.

Before youth grows pale.

Middlemarch is the magnum opus of George Eliot, the masculine nom de plume of Mary Ann Evans, one of the foremost English novelists of all time. She was born in 1819 at Arbury Farm, England, to an Evangelical Protestant father whose religious beliefs she soundly rejected. Like Tolstoy and Flaubert, George Eliot was part of the nineteenth century realist movement in literature, taking great pains to create life-like characters representing ordinary people in stories of remarkable verisimilitude. Eliot believed female novelists were held in low regard by the English literati, thus the pen name.

At 838 pages and 86 chapters, Middlemarch is no light read; entire semesters have been consumed by it. Suffice it to say that a broad cast of characters—none dominant, all astonishingly real—drive three wide-ranging but interwoven story lines revolving around a number of themes: love and marriage; the station of women in Victorian society; class and social mobility; and the clash between idealism and self-interest, all set in the (fictitious) rural English town of Middlemarch. The book’s complete title— Middlemarch: A Study of Provincial Life—suggests as much.

Among the principal characters is Tertius Lydgate, an ambitious young doctor who comes to Middlemarch intent on starting a new fever hospital for the poor. Lydgate vows to establish new ways of practicing medicine, based on observation and the recording of data and scientific method, in place of the rampant charlatanism of the day.

“A fine fever hospital in addition to the old infirmary might be the nucleus of a medical school here, when once we get our medical reforms; and what would do more for medical education than the spread of such schools over the country?”

…there was a general impression that Lydgate was something rather more uncommon than any general practitioner in Middlemarch.

But Lydgate, like many visionaries, is arrogant, to colleagues and patients alike.

“I have not yet been pained by finding any excessive talent in Middlemarch,” said Lydgate bluntly.

Lydgate’s conceit was…never simpering, never impertinent, but massive in its claims and benevolently contemptuous.

He winds up marrying the town beauty, Rosamond Vincy, but it is an unhappy match. Rosamond is shallow and materialistic, and her pretentious spending quickly plunges Lydgate into severe indebtedness. His financial desperation leads him to accept a loan under dubious circumstances, and the ensuing public humiliation he suffers causes him to surrender his dream of revolutionizing the way medicine is practiced. To appease his wife, he becomes the kind of doctor he once held in contempt, catering to the wealthy until he becomes wealthy himself. Lydgate dies at fifty, disillusioned and unfulfilled, arrogant no more.

But arrogance is not the brilliant and perceptive Lydgate’s worst flaw; a lack of empathy is. He seeks to understand human behavior in a cold, dispassionate way, without emotionally connecting to the human beings he studies. Both his métier and marriage suffer for it.

“I was early bitten with an interest in structure, and it is what lies most directly in my profession. I have no hobby besides.”

The tragedy of Lydgate is the tragedy of any doctor who fails to become proficient in the art of medicine as well as the science. The science of medicine involves knowing what treatment to apply; the art of medicine requires the persuasion of other human beings to suffer it.

All medical schools produce their share of Lydgates, brilliant classroom students who excel at mastering the basic sciences, but founder at the bedside. It just isn’t there, that natural camaraderie that causes a patient to turn to his wife and say, within minutes of meeting a surgeon, “I like her. I’m going to let her do whatever she needs to.”

Consent to undergo the often invasive and sometimes hazardous treatments we ask patients to endure depends upon an irrational trust—irrational in that an emotional connection forged between doctor and patient gives rise to it. Such trust is the coin of the medical realm, and the path to gaining it begins with authentic recognition of—and genuine sympathy for—the plight of the afflicted. These skills are not acquired in cellular biology class, but rather are developed with the aid of paintings and plays and poems and novels.

Like Middlemarch.

Most often, this space is devoted to the nexus of literature and medicine, but on occasion, it is about only one or the other. This is one of those occasions.

Two recent events have captured my attention: the awarding of the Nobel Peace Prize to Chinese dissident Liu Xiaobo, and this year’s National Book Awards.

First, Liu Xiaobo.

The Chinese government’s response to Liu’s Nobel made it abundantly clear that the greatest threat to the world’s rising superpower, China, is not the world’s reigning superpower, the United States, but rather a fifty-five-year-old professor of literature who is currently serving an eleven-year prison sentence (for signing a manifesto of democratic values called Charter 08). How can this be? American complaints about Chinese currency manipulation and intellectual piracy barely elicit a fillip from Beijing, yet a Chinese citizen winning the Noble Peace Prize results in one of the greatest governmental overreactions since the Gulf oil spill. (Where did all that all oil go to, anyway? Apocalypse Not.)

By preventing Liu or his wife from journeying to Oslo to accept the award (the first time in 74 years the prize winner went unrepresented), the ChiComs have fatefully ushered their bête noir—public doubts about their legitimacy—onto a brightly lit international stage. The empty chair in Oslo is a lasting and damaging image, imprinted not only onto the minds of hundreds of millions of Chinese, but onto the minds of the rest of the world, as well. Even President Obama—no great champion of democracy and human rights when it comes to the Chinese, not with all those devalued dollars he wants them to sop up—seems bolstered by the incident, calling for Liu’s release “as soon as possible.”

It is no coincidence that Liu is a professor of literature. For literature—and in particular, literary fiction—has always challenged tyranny. Consider One Day in the Life of Ivan Denisovich, the landmark 1962 novel of Stalinist repression by Nobel Prize winner—in Literature, of course—Aleksandr Solzhenitsyn. His 158-page indictment of the Soviet Gulag is credited with fundamentally and forever changing the West’s perception of the U.S.S.R. And then there’s the book recently released by Charles Hill, entitled Grand Strategies: Literature, Statecraft, and World Order, which explores literature’s influence through the ages on politics and government through the works of 70 poets and novelists.

“Statecraft cannot be practiced in the absence of literature,” Hill writes. “Literature lives in the realm grand strategy requires, beyond rational calculation, in acts of the imagination.” (Precisely the argument for studying the nexus of medicine and literature: to wit, literary fiction accesses the meaning of illness in ways scientific method—logic and reason—cannot.)

Hill argues, as do I, that only fiction can reveal the truth. “Literature’s freedom to explore endless or exquisite details, portray the thoughts of imaginary characters, and dramatize large themes through intricate plots brings it closest to the reality of ‘how the world really works.’”

Which brings me to this year’s National Book Awards, held November 17 in New York. The winner in Fiction—Lord of Misrule—however, is not the novel that interests me: one of the other finalists, Parrot and Olivier in America, is the one I was rooting for. Not because it was the best novel—though imaginative and forceful and beautiful in style and prose, it loses focus and lacks unity at times—but because of what it is about: Democracy in America, the French aristocrat Alexis de Tocqueville’s brilliant chronicle of the American experiment. Written by an expatriate Australian, Peter Carey, Parrot and Olivier in America is a re-imagining of the life of de Tocqueville and his study of the phenomenon of American democracy, this time as seen through the eyes of a disaffected, voluble French lawyer and his spunky English factotum. Any novel attempting to plow the hallowed ground of de Tocqueville’s classic treatise—in many ways the most profound analysis of American democracy I have ever read—is thumbs up with me. That it was written by a foreigner—as was the original—only adds to its appeal.

So there you have it, an Australian novelist re-discovering the treasure of American democracy, and a Chinese professor of literature with the courage to speak truth to power about democracy, as he did in the December 1988 Hong Kong Liberty Monthly, and has done ever since: “Westernization is not a choice of a nation, but a choice for the human race.” No wonder they’re afraid of him.

All in all, a very good month for literature and democracy.

Every so often there are cases that challenge our understanding of what constitutes futile medical care. Cases that remind us of the tremendous ability human beings have to adjust their capacities to the reality of their impairments. Sometimes majestically so.

There is no more inspiring example of this than the story of Jean-Dominique Bauby, the editor-in-chief of Elle magazine who in 1995 suffered a stroke that resulted in what is known as “locked-in syndrome”—a brainstem vascular occlusion of the pons resulting in quadriplegia and speechlessness, but with the retention of normal consciousness and cognitive ability. In other words, complete awareness and comprehension of being unable to move or talk. Pure terror.

Most patients die soon after the occurrence of this devastating event. But not always. Some live for months or even years in this immured state, at great financial cost to society. One cannot help but wonder in such cases if the cost justifies the benefit? Surely locked-in syndrome meets the definition of futile care: cases with so little hope of improving that continued measures of life-sustaining support are deemed futile and therefore abandoned in favor of palliation. Modern hospice care, with the proper use of analgesia and sedation, can make the embrace of death for victims of locked-in syndrome no more traumatic than slipping off into a drugged slumber from which they never awaken.

Interestingly enough, the literary world gave voice to this pitiful syndrome long before the medical world did. Plum and Posner didn’t coin its name (Posner, J.B., Saper, C.B., Schiff, N.D., and Plum, F., The diagnosis of stupor and coma. 4th ed. 2007: Oxford University Press.) until 1966; Alexander Dumas wrote of it in 1820, in The Count of Monte Cristo. A character in the story, Monsieur Noirtier de Villefort, suffered from this precise condition, and was described by Dumas as “a corpse with living eyes”—as apt and succinct a description of a patient with locked-in syndrome as any modern day neurologist could ever hope to articulate.

But what of Jean-Dominique Bauby? What became of his locked-in syndrome? It turns out that Bauby, due to the peculiarities of his particular stroke, was left with movement in one part of his body, and one part only: his left eyelid, a slightly incomplete variant of locked-in syndrome. And what did Monsieur Bauby choose to do with this pathophysiologic oddity? Unbelievably, he “dictated” his memoir—by blinking.

“It is a simple enough system. You read off the alphabet . . . until, with a blink of my eye, I stop you at the letter to be noted. The maneuver is repeated for the letters that follow, so that fairly soon you have a whole word.”

In this way, he laboriously blinked out his memoir, working hours a day for nearly a year in response to a scribe who meticulously called out letters ordered by their frequency of use. It took him on average two minutes per word to produce a book that fearlessly chronicled his every indignity.

“One day . . . I can find it amusing, in my 45th year, to be cleaned up and turned over, to have my bottom wiped and swaddled like a newborn’s. I even derive a guilty pleasure from this total lapse into infancy. But the next day, the same procedure seems to me unbearably sad, and a tear rolls down through the lather a nurse’s aide spreads over my cheeks.”

One of the more astounding revelations of this excruciating account was that shortly before his stroke, Bauby had reread The Count of Monte Cristo.

Jean-Dominique Bauby died two days after The Diving Bell and the Butterfly was published. The diving bell was meant to represent the prison of his body, and the butterfly his trapped mind fluttering inside it. His story is testimony of the majestic agony of the afflicted—and of the penumbra of medical futility, which even for a corpse with living eyes swirls beyond the palings of our certitude.

One of the true narrative medicine gems of contemporary literature is The Echo Maker, by Richard Powers. This lavishly written story won a 2006 National Book Award and was a finalist for the 2007 Pulitzer Prize for Fiction. Powers is a fiercely intelligent writer who turns out superbly crafted fiction leavened with heavy doses of medical science and technology.

Though The Echo Maker’s chief concern is with the elusive concept of self-identity, it is one of its subordinate themes that attracted my attention: the munificent but not limitless capacity of human beings to care for loved ones. A capacity in no small part determined by the nature of the relationship between caregiver and afflicted: consider the intensity of a woman’s devotion to her stricken child compared to what she may muster for an ill third cousin.

But what of a woman’s devotion to her brain-injured, delusional brother? Somewhere in between, perhaps.

The novel begins with an accident suffered by Mark Schluter, a 27-year-old meat-processor whose truck spins out of control and rolls over on a deserted stretch of highway outside Kearney, Nebraska. He suffers massive closed-head trauma and lapses into a coma, from which he later awakens with a rare neurological condition: Capgras syndrome, an identification disorder characterized by the patient’s belief that his closest friends and relatives are actually imposters of his closest friends and relatives, perfect doubles posing as loved ones in an elaborate plot to deceive him. The disorder, of which there are fewer than 500 reported cases, is thought to occur from a failure to integrate the emotional recognition of someone with the intellectual recognition of that same person’s face.

“His amygdala can’t talk with his cortex,” is how Mark’s sister, Karin Schluter, comes to understand his doctors’ explanation of the disorder.

“…Pushed to a choice, cortex has to defer to amygdala,” they say. “So it’s not what you think you feel that wins out, it’s what you feel you think.”

Karin, four years older than Mark and his sole remaining family, abandons her job at a computer company in Sioux City—and a subsistence romance with a techie co-worker—to care for her brother, who rewards her by steadfastly refusing to believe she is his sister, insisting instead that she is a diabolical body double sent to confound him. The plot is advanced by a cryptic note alluding to the cause—and meaning—of Mark’s accident. And by the appearance on the scene of a nationally renowned neurologist, whose fame as a diagnostician rests on his ability to coax painfully intimate life stories from his patients.

“Consciousness works by telling a story…” he has written, in one of his numerous best-selling books.

Mark’s recovery, the unmasking of a mysterious nurse’s aide as an accessory to the accident, and the intersecting character arcs of Karin and the neurologist are all tied together in a satisfying ending with lasting resonance about the way we view ourselves. But overshadowed by the story’s strong primary theme of self-identity is the no less compelling one of human fealty.

How long would you, if you were a thirty-one-year-old woman with nothing but false starts in life, be willing to put everything on hold for your brother? A brother who even when his amygdala was talking to his cortex, never amounted to more than a gamer with a taste for cheap beer and lowbrow goofiness. A brother who rabidly, obstinately, tragically insists you are not his sister—calling you instead “the actress Karin” and “the pretend sister”—until you secretly wish it were so. How long would you keep trying to reach him, keep waiting for his emotions to reconnect with his intellect? A month? A year? The rest of your life? How long a postponement of your own wants and needs before you begin to wonder if he’s worth it?

During a quarter-century of caring for chronically ill patients, I have seen acts of devotion and loyalty so loving and unwavering it made me feel unworthy to witness them. So, too, have I seen heart-cracking abandonments that made me doubt the future of our cruel, unblinking species. And patients who destroyed the lives of those around them with their insatiable needs, leaving me pleading with co-dependent loved ones to distance themselves before it was too late.

Perhaps some of you have experienced the tension between altruistic impulse and the need to live your own lives, the joy and sorrow of being your brother’s keeper. Perhaps some of you even know what it is like to be the brother.

Tell us your thoughts on human devotion, brothers and keepers alike.

One of the most challenging aspects of medical school is to drink from the torrent—the fire hose—of scientific knowledge pumped down your throat while still remaining a sentient human being. And to remember that it was a desire to help other human beings that attracted you to medicine in the first place. The amount of information medical students are asked to assimilate is so enormous—so pantagruelian, to steal from the French doctor-turned-humanist Francois Rabelais—that it almost unavoidably turns idealistic young men and women into cold-purposed cyborgs, whose entire reason for being becomes the digestion of data.

Medical educators have for decades struggled to produce physicians who can not only process this ever-growing fund of knowledge, but who are also capable of evincing genuine compassion and empathy for the patients they apply it to. Many approaches have been tried to achieve this delicate balance. As readers of this blog are aware, courses in the field of narrative medicine help medical students maintain a humanistic perspective by requiring close reading of specific works of literature that stimulate the brain’s empathy centers, putatively located in the anterior cingulate cortex and amygdala.

Another possible way of assuring that medical trainees leave medical school with an ability to forge empathic connections with their patients is to select a limited number of students who already have this quality, in hopes that their humanistic impulses will be less prone to withering than those of hard-core science types. One medical school that has gone all in on this theory is the Mount Sinai School of Medicine in New York, with their Humanities and Medicine Early Acceptance Program, which “provides a path to medical school that offers maximum flexibility in the undergraduate years for students to explore their interests in humanities and social sciences at top liberal arts colleges and research universities.”

Thirty to thirty-five college sophomores are accepted annually into the program. To qualify, they are required to major in a humanities subject in exchange for not having to take physics or calculus, and for taking a reduced course load of organic chemistry. One year of undergraduate general chemistry and biology and one semester of organic chemistry remain mandatory for matriculation. Students admitted through this program are not permitted to take the Medical College Admission Test (MCAT). In 2009, there were 300 or so applicants to the program, with 34 students accepted.

Medical students entering Mount Sinai via the Humanities and Medicine Program performed in line with students accepted in traditional fashion, as assessed by class ranking, medical clerkship grades, standardized test scores, and the quality of residency positions obtained for post-graduate training. As described in a letter in the British medical journal The Lancet this month (Medoff, S. Correspondence. Lancet. 2010; 376: 1542), “Students in the programme this year have worked as professional actors, lived with shaman healers in Peru, taught English in Indonesia as Fulbright scholars, and pursued advanced degrees in classical music performance.” Mount Sinai’s web site states that they seek candidates who “have personal attributes that show promise for becoming a compassionate and humanistic physician.”

In other words, despite the explosion in basic science knowledge all medical students are expected to master, educators have become gun-shy about taking too many science nerds. The message of programs such as Mount Sinai’s is clear: Be first a human, then a doctor.

Pity me as I wish to be pitied. That is the plea of the tortured protagonist in Leo Tolstoy’s brilliant 1886 novella, The Death of Ivan Ilyich.

Tolstoy was born in 1828 into Czarist Russia’s landed gentry. Though orphaned at a young age, he enjoyed the typical privileges wealth and title afforded—passive income, summers in the country, and enrollment at Kazan University. But it was later, after dropping out of school and joining the army, that Count Tolstoy would launch his career as a writer from the Crimean front.

There is perhaps no other literary character who gives voice to the agony of the afflicted more profoundly than Ivan Ilyich, a forty-five-year-old parvenu who assiduously wends his way through Czarist Russia’s bureaucracy to become a respected judge, only to develop an insidious illness that announces its presence while he is hanging curtains in a stylish home beyond his means to afford.

…he made a false step and slipped…but only knocked his side against the knob of the window frame. The bruised place was painful but the pain soon passed…

But not for long.

…Ivan Ilyich…had a queer taste in his mouth and felt some discomfort in his left side.

His symptoms begin to disrupt his carefully ordered and superficially fulfilling life. He grows irritable from discomfort and more quarrelsome with his wife, with whom his relationship is abysmal to begin with, a thing to be endured to keep up appearances. Her patience with him is soon exhausted.

She began to wish he would die; yet she did not want him to die because then his salary would cease.

Tolstoy passes judgment on the spiritual emptiness of social striving with one of the most famous and devastating sentences in Russian literature.

Ivan Ilyich’s life had been most simple and most ordinary and therefore most terrible.

Ivan’s symptoms intensify, mystifying a bevy of doctors who attribute it one day to a “floating kidney,” and the next to appendicitis.

The pain in his side oppressed him and seemed to grow worse and more incessant, while the taste in his mouth grew stranger and stranger…It seemed to him that his breath had a disgusting smell, and he was conscious of a loss of appetite and strength.

The nephrologist in me cannot resist pointing out that with the exception of his pain, all of Ivan Ilyich’s symptoms can be explained by uremia, an advanced stage of kidney failure. But whatever the cause, he becomes angry and bitter over his doctors’ failure to cure him. He realizes he is dying.

And he had to live thus all alone on the brink of an abyss, with no one who understood or pitied him…

He becomes resentful, especially of his still-healthy wife.

While she was kissing him he hated her from the bottom of his soul and with difficulty refrained from pushing her away.

Why is he so resentful? Because no one gives him what he wants. We come, now, to the heart of things, to what patients want and need and crave with all their being.

…what most tormented Ivan Ilyich was that no one pitied him as he wished to be pitied. At certain moments after prolonged suffering he wished most of all (though he would have been ashamed to confess it) for someone to pity him as a sick child is pitied. He longed to be petted and comforted.

He finally gets the succor he seeks from the peasant Gerasim, who holds him the way he wants to be held—and talks to him about death openly and honestly. The authenticity of Gerasim, in contrast to the hypocrisy of the aristocrats Ivan Ilyich has lived his life to please, has a powerful effect on him.

“Maybe I did not live as I ought to have done,” it suddenly occurred to him…“What if my whole life has been wrong?”

He softens and allows a priest to hear his confession, then endures an agonizing three days, during which…he struggled in that black sack into which he was being thrust by an invisible, resistless force.

In the end, Ivan Ilyich rejects the lie of his life and embraces the truth of his death; in so doing, he is at peace.

He sought his former accustomed fear of death and did not find it. “Where is it? What death?” There was no fear because there was no death.

In place of death there was light.

“So that’s what it is!” he suddenly exclaimed aloud. “What joy!”

Ivan Ilyich wanted nothing more than to be stroked like a child. Tolstoy’s insight into the enormous frustration patients feel at the end of life, the agony they endure, at not being touched in a compassionate way is a call to physicians—to all caregivers—to lay hands on our patients not only in a clinical way, as part of an examination, but also in an emotionally meaningful, loving way. Embrace them. Pity them. And patients: express your need. No pathos, no pity. Let people know you want to be held like a baby.

For from this will come a relief no surgery or medication can bring.

What do hospice nurses and teenage heroin addicts have in common? One may be an unintended consequence of the other.

A pair of articles published this week in two prestigious medical journals help make the case.

The Lancet reported (Shetty, Priya. The Lancet:376; 1453-1454.) that 47 million of the 58 million deaths occurring annually worldwide take place in developing countries, and that of these, fully 27 million die without having received proper palliative care. The article attributes this dismal performance to the overly restrictive regulation of narcotic pain relievers in an effort to help combat drug trafficking; morphine is unavailable in more than 150 of these countries. The regulatory burdens are so great that most pharmacies are reluctant to even order it. The strongest analgesic available to many cancer patients in developing countries is aspirin. Of 1 million cancer patients requiring pain medication in India in 2008, only 40,000 received morphine.

Such grisly data can’t help but make one grateful to be living in the developed world, where—in no small part thanks to Leo Tolstoy, whose short story The Death of Ivan Ilyitch greatly increased public awareness of the need for palliative care—the situation is much different. Cancer patients in the United States have widespread access to hospice programs—modern day Mercy Queens—and narcotic pain relievers. But we may be victims of our own success. The movement to relieve pain and suffering at the end-of-life has morphed into an effort to relieve pain and suffering in the general population, with extended-release, long-acting opioids the agents of choice. An editorial in The New England Journal of Medicine discusses the consequences (Okie, Susan. N Engl J Med: 363;21. 1981-1984):

There are approximately 1 million prescribers of controlled substances registered with the Drug Enforcement Administration and about 4 million patients receiving long-acting opioids annually. Deaths from unintentional drug overdoses are now the second leading cause of accidental death in the United States, with 27,658 such deaths in 2007. 41% of these—11,499—were due to synthetic opioids. Emergency room visits for opioid abuse more than doubled from 2004 to 2008, and admissions to chemical dependency treatment programs rose by 400% from 1998 to 2008, with prescription narcotics second only to marijuana as the cause of addiction. Since 1990, the medical use of opioids has increased ten-fold. Drugs such as Oxycontin “are essentially legal heroin.”

The proliferation of these drugs has put them in the medicine cabinets of citizens—and parents—all across the country. So much so that it is just as easy for a thrill-seeking 14-year-old to filch some Oxycontin from the medicine cabinet as it is to siphon some Jack Daniels from the liquor cabinet. But Oxycontin is highly addicting—and expensive. Teenagers who develop an addiction to it—whether taken from the medicine cabinet of their parents or that of their friends’ parents—soon have trouble scoring enough to maintain them. They quickly discover a much more affordable and readily available alternative: heroin, which when smoked is dirt cheap compared to Oxycontin. A two-hour exposé on local TV in San Diego this week referred to the problem of teen use of Oxycontin with subsequent migration to heroin as “epidemic.”

So there you have it: from genuine Mercy Queens to teenage heroin fiends, the rise of opioid use in America.

We should perhaps not be so quick to condemn our developing world counterparts for their reluctance to embrace our more permissive use of prescription narcotics.

When death puts an end to a marriage of long duration—30, 40, 50 years or more—the sense of loss experienced by the surviving spouse can be overwhelming. They suffer a paralyzing, disorienting, emotionally jarring type of grief, intense and long lasting. Some stop eating and lose weight; others become confused, prone to wandering, no destination in mind. Suffering so profound it makes one want to look away, a cri de coeur too tender to witness. So forlorn can they be, it is not unusual for the newly widowed to themselves die soon thereafter—from a broken heart, a lack of will to go on. No reason to live.

Some, though, react differently. By refusing to sever the bond. By attempting to bridge the very chasm between this world and the next.

There is no more beautiful expression of this special kind of bereavement than Richard Wilbur’s poem “The House.” Wilbur is twice winner of the Pulitzer Prize for Poetry and was the 1987 United States Poet Laureate. A pair of quotes by Wilbur—taken from two separate interviews in 1977 later published in The Paris Review—tell us all we need to know about poetry—and all we need to know about Richard Wilbur, whose literary powers at 89 remain undiminished.

“One of the jobs of poetry is to make the unbearable bearable, not by falsehood but by clear, precise confrontation.”

“To put it simply, I feel that the universe is full of glorious energy, that the energy tends to take pattern and shape, and that the ultimate character of things is comely and good.”

“The House,” a short but sweetly haunting piece, is from his newest collection, Anterooms: New Poems and Translations by Richard Wilbur.

Sometimes, on waking, she would close her eyes
For a last look at that white house she knew
In sleep alone, and held no title to,
And had not entered yet, for all her sighs.

What did she tell me of that house of hers?
White gatepost; terrace; fanlight of the door;
A widow’s walk above the bouldered shore;
Salt winds that ruffle the surrounding firs.

Is she now there, wherever there may be?
Only a foolish man would hope to find
That haven fashioned by her dreaming mind.
Night after night, my love, I put to sea.

Are such dialogues with the dead one-way conversations, or is someone on the other side listening?